Every year, the Friedreich’s Ataxia Research Alliance (FARA) has Friedreich’s Ataxia Awareness Day on the third Saturday in May. It is not an official or nationally recognized day – but a day that the FA community spreads the word about this disease to help raise awareness. It is usually benchmarked by a social media campaign.
To help raise awareness, I reached out to Texas Governor Greg Abbott to have Saturday, May 16th, 2015 officially declared Friedreich’s Ataxia Awareness Day in Texas. And he did it!! It was official! Armed with the official declaration, I decided to reach out to a few local media outlets to share my story and hopefully bring attention to FA.
On Thursday May 14, I got a call from KXAN’s David Scott (KXAN is the Austin NBC channel.) He wanted to come out that evening to interview me!! I was simultaneously super excited and crazy nervous! I was going to tell my beloved city of Austin all about FA – what an opportunity! I was, and still am, so thankful to KXAN for taking an interest in FA Awareness Day and giving me such a generous platform to share my story.
Just like me, David Scott had never heard of FA. So the interview consisted of me telling him a little about the disease and what the diagnosis means. We then talked specifically about my case: when I started experiencing symptoms, what those looked like, how I was diagnosed and what it meant for my future.
Here is the story!: http://kxan.com/2015/05/16/local-mom-fights-rare-disease/
I do want to note one little error in the report. He initially says that “5 million” Americans have FA, while it is far less. It is estimated that only 5,000 people in the US have FA (thankfully!).
Thank you for sharing my story and helping to raise awareness!